The eyes continue to improve

Boy are we glad! Randy saw the eye doctor Monday and got a great report.  Not only is he using both eyes, he is using them together!!!  We are reducing his patching from 2-2.5 hours Monday-Friday to 2-2.5 hours Monday, Wednesday, and Friday.  If he continues to use them together with this amount of patching, then we will try no patching.

I am so grateful for his current opthamologist.  Although he does not freely explain as much as I would like (he makes me ask sooooo many questions) and we disagree about vision therapy, I respect that he has always valued my sons quality of life.  I felt like his first opthamologist looks at his scans (brain), looked at his history, and wrote him off.  He kept saying "his eyes are fine" when it was pretty obvious that they were not.  His current opthamologist also cares how Randy appears to the world.  He wants to surgically align Randy's eyes before he reaches kindergarten.  So we will continue with his plan to patch to strengthen the vision, and surgery in the next year or so to align his eyes.

And I will pursue vision therapy, without his blessing.

Conversation: On the way to daycare

Me: Randy what are you going to do at daycare today?
Randy: I go daycare.
Me: Are you going to play with Michael, Payton, and Dakota?
Randy: I play Michael.... uh, Munoz
Me: Munoz is not at daycare.
Randy: Munoz at Daddy's house.

LOL.  He watches Yo Gabba Gabba in the basement with Daddy every evening.

Look Ma, no hands!

That is Randy on the swing in gymnastics.  It was the first time that the little ones have used it.  There were three kids in class that day.  The little girls in the glass seemed to like it a little, but Randy LOVED the swing.  He had this huge belly laugh and cried when he had to get off (she gave him a second turn).

Randy has been in gymnastics since August.  It has been a great addition to his therapies.  We are in the Mom n' Tots class; it starts at 15 months.  There is a 2/3 class and a 4/5 class.  We started in this class because he was not walking in August.  The first couple of classes consisted of me dragging him from station to station and putting him through all the paces.  His teacher and I talked about moving him up.  We both agree that maturity wise he is ready.  He is able to follow directions and take turns much better than his classmates; but he is also 6-12 months older than they are.  Physically though, he is still behind these much younger peers.  The coach and I plan to move him up when he turns 3.  She will be moving some of her older girls in the 2/3 class and thinks that he will do great.  There are two instructors in the class. I am so proud of him.

5:45 p.m.

Someone missed their nap today.

Belated 1st Shuntiversay!

How could I have forgotten?  It has been a year (and a few days) since Randy's last shunt revision.  I am soooo happy and moved with emotion.  I have mixed feelings about the fact that I forgot.  I am happy that we are living life and not worrying about his health, but I don't ever want to forget to the point that I take his good health for granted.  I want to always remain grateful.

One year ago-Post Surgery

Guess what's in his hand?

A chicken drummette!!!!!! I can't believe it.  He nibble on it.  Chewed the chicken and then spit it out. LOL.  It is certainly progress.

Drinking from an open cup.... LOL

2.5 year well check

I had no idea there was a well check at 2.5.  The nurse said it was a relatively new trend and not all pediatricians do it.

Randy's check was uneventful.  It was the first time I did not have a long list of questions.  His pediatrician was pleased to see him walking.  He spent a lot of time flexing his ankle and checking his reflexes.  He noted that the tightness is still there, but that his range of motion is still good.  He asked if he was in orthotics.  I told him that the orthopedic doctor said that they were not needed medically, but they may be helpful for balance if the PT likes.  His PT says that she wants to hold off and see what development does for his flat feet and for his ankles that pronate (lean in).  She says the orthotic will feel awkward and wants him to be a committed walker before adding orthotics (if at all).

His ped remarked that his head looked good for the number of surgeries he's had.  He was pleased with his eyes and very pleased with his growth.  His stats are:

Length - 35.75 inches
Weight - 27 lbs
Head circumference - 45.5 cm

Despite all our feeding woes, he continues to grow well.  He is now 25th-50th percentile for height (up from 10th-25th) and 10th-25th percentile for weight (up from 5th-10th).  His head circumference is still not on the charts, but the growth is following the same curve.  The ped is going to email his head circumference to the neurosurgeon.  Neither of them are overly concerned about his slow head growth, especially since he is developing cognitively.  I could not believe that he grew 3 inches, gained 3 pounds, and his head grew 1 cm in six months!

Long overdue update

I have not posted a real update about Randy in quite a while.  It is long overdue.

Developmental Toddler program:
Randy started "pre-school" August 24th.  He attends Monday-Thursday for 2.5 hours a day.  He rides the bus to and from daycare.  Two of his "friends" from daycare also attend (they both ride the bus), but are not in his class.  I visited the school last spring and was fortunate to get the exact class that I wanted (without even asking).  There are 7 kids (all special needs), 1 teacher, and 1.5 para's (one is a floater).  Some of the kids attend two days a week and the others attend 4 days per week.  The number of days is dependent on their needs.  So the kids in the class range from those with mild speech delays or mild OT delays (2 days per week) to children wheelchair bound and non verbal.  Randy began the year as one of two children not walking.  Randy has group PT, OT and speech each week and the vision teacher works with him individually or in conjunction with another therapist (this week she saw him with the PT to work on mobility).

Daycare:
Randy is soooo happy to be back at daycare.  He has been dubbed the "class leader" by his teachers and the therapists.  He is one of the older kids in the class.  He is certainly the most verbal and is resisting being a big boy in class at times.  He can now say all the teachers names still greets every person there.  He is going to be featured in their annual report this year.  I will scan his article when I get it.

Therapy:
PT-Randy is WALKING!!!! He has been independently walking for 3 weeks.  He has been so close for months.  He just decided that he did not need any help and just stood and walked.  He has improved so much in 3 short weeks.  He can now stand (without moving).  He can turn around without getting on his knees.  His therapist has already began working on stairs and have given him a new goal of walking backwards.

OT-He is only being checked until we get new visits next year.  His OT is also his feeding therapist, so she just "checks" with him occasionally.  He gets lots of fine motor work in daycare and in pre-school.

Feeding-Still the bane of my existence.  His therapists says he's making great progress.  I am having a hard time seeing it.  It just feels so slow.  He now eats cereal bars and is eating thicker purees.  I make a batch of "baby food" every weekend and freeze it in small containers.  I have to send it to daycare or he would starve.

Speech-His speech therapist is on maternity leave.  I opted to put his therapy on hold since she is only out 6 weeks and he's in daycare and pre-school.  I am working on getting him to tell me about his day.  I ask him about things I know and prompt him to give me a response.  I'll say, "What did you do today?" He'll say, "Mmmmmm I don't know." I'll ask, "Did you ride the bus?"  He'll say, "Yes."  I'll tell him to say, "I rode the bus."  He won't say anything.  I figure at some point he will start to respond.

Gymnastics & swimming:
Both of these are Mommy & Me.  Mommy is getting quite the workout. LOL.  He loves gymnastics and likes swimming.  In gymnastics I lift him through all these circuits.  He has gone three weeks and I see and improvement.  He will now step up onto the balance beam (week one he screamed when I put his foot on it).  He goes through the tunnel (she switched the navy blue tunnel to a lime green one and now he loves it).  He will allow me to move him through a forward roll.  Although he is not helping at all, at least he is not arching his back and flailing his arms like week one.  Swimming is only OK.  He likes to be able to splash around and play in the water and this lady girl has us doing stuff like rescue breathing and showing us the fire exits.  My baby just wants to swim.

Eyes:
Patching has decreased from 4 hours per day to 2-2.5 hours five days per week.  His eyes look great!  He will probably have surgery next summer to straighten them more.

2009

2010

Doctor appointments:
They have really slowed down this third year of life.  He sees his pediatrician on Tuesday for a well check.  Is there a 2.5 year well check?  My friends daughter went at two and does not go back until age three.  He sees neurosurgery yearly now.  His next appointment with and MRI is June 2011.  He sees the ENT yearly with a hearing exam.  That appointment is May 2011.  The feeding team appointment is next month.  I am going to discuss discontinuing these appointments.  His growth is great and his reflux is controlled.  I will just see his pediatrician for his reflux and allow the CP clinic to chart his growth and nutrition.  We'll see.  His next CP appointment is in January 2011; he sees them every 3-6 months.  He still sees his eye doctor every three months.  These appointments are a piece a cake compared to the monthly appointments with almost all these specialists that he had at one point.

This is a really good time for us right now.  I have the days when I'm super stressed out over feeding or when I begin to worry about his IEP that is just around the corner; but overall, things are good.

This post speaks for itself

http://www.facebook.com/video/video.php?v=429420688686&saved

Wordless Wednesday

More

I have to preface this post by saying that I am guilty of letting Randy snack in rooms other than the kitchen and dining room.

Randy brought me this:

And then did this:

I know this may not seem like a big deal to some, but it is HUGE to me.  This is the first time that he has ever asked me for food.  He generally just gets cranky when he's hungry.  So I immediately went to the kitchen to get his the cereal bar he asked for.  And he ate the whole bar.  It made the trip to Whole Foods worthwhile.

I really hope so....

Today my sister-in-law, Randy's godmother, asked me if Randy was done with having surgeries for a while.  I told her, "I hope so"; but truth is that I really do not know.  That is life with a shunt.  It could fail tonight or not for ten years or never again.  It's a piece of hardware. It's like a car, or a refrigerator, or a television.  It seems that some people can have these things 20 years and they never break (well not a car), and others own them for 6 months and they break all the time.

So Randy will always have to be aware of his shunt.  He'll have to pay attention to his body and be on the lookout for warning signs.  He can't take a bout of vomiting for granted.  He can't dismiss a recurring headache.  He can't brush off fatigue.

But I really hope he does not have surgery anytime soon.

Can you hear me now?

Randy can.  He passed his hearing test with flying colors!!!!!! He has had several hearing screenings:

Newborn - passed in left ear, refer in right
July 2008 - passed (sort of)
April 2009 - borderline
May 2010 - failed
July 2010 - PASSED

He did great.  His attention span was pretty good and he was able to visually attend the TV screens they used.  I think he did so much better because he is in a better place visually and cognitively.

He's a fish

It has been my desire to take Randy to the pool at an early age.  Late May 2009, I eagerly went to my local YMCA and signed him up for swim lessons.  Well in June 2009 he had a shunt revision and July 2009 he had ear tubes inserted.  Then in August 2009, he began his two month illness that I thought would never go away.  He had another shunt revision in November 2009, then we were in the middle of winter and his neurosurgeon and his pediatrician suggested I wait until late spring to enroll him in swim lessons.

So I excitedly looked up the information for lessons this summer.  I decided to wait until July because I was still working part of June.  Well I took too long to go register and was closed out of the class! I was disappointed.  So instead i took him to the pool during open swim.  The first time was about two weeks ago.  He was a little clingy at first, but became comfortable very quickly.  But we where only able to stay in the pool for 15-20 minutes because he began shivering uncontrollably.  Although he has put on some weight, he still does not have enough body fat to keep him warm in the pool (and it was a heated pool). 

So I bought him a swim shirt, and waited for him to get over a slight cold he had before I took him back.  So last night we went back and he LOVED it.  He is a natural in the water.  He splashed his hands.  He kicked he feet.  He knew how to move them together like there were fins and separately in a kicking motion.  He floated on his back.  He even knew to tilt his head back when he floated on his back.  He stayed in the pool for 50 minutes.

The only thing I noticed is that his right leg kind of "dragged" at times.  His right side is his weak side; he has less strength and it is his weak eye.

So I am definitely going to have to get him in some lessons.  I was thinking about the YMCA.  Does anyone have a better suggestion?

Progress

Randy ate the top of a whole Bob Evans biscuit!!!!!  Do you think he can get a commercial spot?  The line can read, "Biscuits so good, even toddlers with feeding issues will eat them!"  LOL.  I know this may not seem like much to you, but to me it is HUGE.  He would not eat the inside, but I will take what I can get.

All of this was after two weeks of misery about his eating.  I did not even blog about it because I feel like I was beating a dead horse and boring my 18 followers.  But I could not help but write about this accomplishment.

I can see other improvements too.  He is willing to pick up unfamiliar foods.  He will lick them too.  Sometimes he puts them to his lips.  Most of the time he will hand the food back to me, but there was a time when he wouldn't even touch unfamiliar foods.

His feeding therapist was able to get him to eat 3/4 of one of these cereal bars.  So I, the eager and excited mom, went out and bought two boxes.  He has eaten ZERO cereal bars for me.  I wish I had her skills.  She was able to put it in the back of his mouth so quickly that he had no choice but to chew.

Nonetheless, I am happy with the progress.

Recent Speech Therapy Re-Evaluation

Dated: June 9, 2010

Long term goals:
Randy will increase expressive language skills to an age-appropriate level (vocabulary, sentence length)-partially achieved
Randy will increase receptive language skills (vocabulary, understanding concepts, following directions)-partially achieved

Short term goals:
Randy will demonstrate appropriate play with toys with cueing 7/10 trials-partially achieved
Randy will follow one-step directions with moderate prompting on 7/10 trials-partially achieved
Randy will imitate CV combinations modeled to him by the SLP five times each therapy session-achieved

Randy has made nice progress during his enrollment in therapy.  His play skills are progressing as Randy activates cause and effects toys independently. However, he continues to need maximum assistance to participate in interactive games with adults such as rolling a ball back and forth.  He continues to explore toys during play through mouthing and banging.  Typically, children aged 6-9 months play without mouthing and banging.

In terms of receptive language, Randy is to follow one-step commands in the context of play.  The commands he follows are predictable given the context of the activity.  For example, he will put balls in a ball popper when requested to do so.  He is not following novel one-step commands in the context of play.  Same aged peers are typically demonstrating their understanding of language by identifying body parts, choosing one object from a group of five, and following two-step related commands.

Regarding expressive language, Randy ~10 words per therapy session.  This has increased since the last status report in April wen Randy was imitating ~5 words per therapy session.  Imitation is an important skill for increasing expressive vocabulary.  Currently, Randy is saying ~20 words independently.  At 24 months of age, children are typically saying 50 words independently.

Recent Physical Therapy Re-Evaluation

Dated: June 7, 2010

Long Term Goals
Randy will ambulate 20' independently using a normal base of support without loss of balance - not achieved
Randy will be in the 25th percentile for gross motor as assessed by the Peabody - not achieved
Randy will walk up and down 4 steps with 1 hand rail and step to gait - not initiated
Randy will step backwards for 5 feet with or without pulling object 3/5 attempts - not initiated
Randy will kick a ball in standing without loss of balance 3/5 attempts - not initiated

Short term goals
Randy will be independent in getting in and out of walker 4/5 attempts - achieved
Randy will ambulates in a walker of push toy for 50' and around corners independently 2/3 attempts - achieved
Randy will stand independently for 1 minute 3/5 attempts - partially achieved
Randy will throw a ball in standing with minimal loss of balance - not achieved
Randy will move from sitting on the floor to standing independently 2/5 attempts - not achieved

His current Peabody z-score is -1.88 which is an improvement over 6 months ago.  Individual scores:
Stationary - 18 months, 37th percentile
Locomotion - 13 months, 1st percentile

Object manipulation - 12 months, 2nd percentile

One Year

That is the next time Randy goes to see his neurosurgeon (barring any emergencies).  His appointment went well.  His scan looked good and I had it put on CD just in case we go out of town or have to go to a closer hospital in an emergency.

The doctor and nurses were so pleased to see how well he is doing.  The doc was impressed with his talking, alertness and development.  Remember that this is the same doctor who said he'd never go to a regular school.  Despite that comment, I still like him.  I feel he has tried to make the best decisions for Randy and kept a great balance between being aggressive in his care and reckless.

His growth was fantastic!!! He weighs 26 lbs and is 33.75 inches long.  Can you believe that?  I was floored.  His head has not grown though.  It is still 45 cm.  That is 6 months with no growth.  The neurosurgeon says that it is not uncommon for kids with hydrocephalus to have small heads (seems like an oxymoron doesn't it?)  His skull closed early than most babies, therefore limiting some head growth.  He wants the pediatrician to email him head measurements and the eye doctor to send him reports.  If there is anything alarming, he will have me bring him in.  He did not seem concerned; so neither will I (this time).

On my radar now

Randy has been followed pretty regularly by audiology since he failed his newborn hearing screening in his right ear. He had a repeat screening about a month after his discharge that was deemed inconclusive and he had another inconclusive test 4 months later and one year later. In the midst of all this, he has had two sets of tubes and is in speech therapy.

Personally I have always thought they were crazy and only took him to appease the doctors. I mean, this is the same baby that could hear the refrigerator from any room in the house. This is the same baby that hears the front door open no matter where he is in the house. This is the baby that startles at every noise made (at least he used to). I have always thought, "There’s no way he has hearing loss".

But now I'm not so sure. When he went to his follow up appointment with the ENT last month (for his ear tubes), he sent him to get a hearing test with the audiologist on staff. They were sooooo kind and did a good job of testing him despite the fact that it was 6:00p. They could not get an accurate reading with the tympanogram in his right ear, and he was not adequately responding to "soft sounds". She seemed really concerned and insisted that I make an appointment for a repeat test within three months. She also told me that if he was having any procedures done before he came back to her, that I should call her so that she can do an ABR with him while he is sedated. An ABR is auditory brainstem response test. A test for hearing and brain (neurological) functioning. ABR may be used in the evaluation of hearing integrity (and neurologic normalcy) in infants and young children.

Even with that conversation I was still not convinced that there could be a problem. Then I started replaying the appointment in my head..... and really thinking about Randy's speech. There are so many sounds he simply does not make. For example, when he says "hi", it sounds like "aaah". The phrase "so strong" sounds like "o ong". These are only a couple. I was talking at work with a few colleagues and we were on the subject of the things kids say and I mentioned the way he says "hi" and how people act like they do not know what he is saying. She then says, "Tiffany, he may have high frequency hearing loss." This is not the first time she has asked me about his hearing. Maybe she picked up on something in the times she has met him? She has a 30 year old daughter who is deaf, so she is attuned to something like that.

Well I turned to my frenemy the Internet and found some information. One website states, "People with hearing loss often have difficulty differentiating words that sound alike, especially words that contain S, F, SH, CH, H, TH, T, K or soft C sounds. These consonants are in a much higher frequency range than vowels and other consonants." I am definitely going to bring this up with his speech therapist. I'm not panicked, but it is now on my radar.

It's been a long time

I’m not sure why it has been so long since I’ve last posted. I can always think of a million things to post about such as his hearing test, visit to ENT, tour of the toddler programs, ophthalmology appointments, speech, PT, feeding, etc…. But then I get the computer and do a million other things…. Not sure why?

Instead……

2-year well visit

Randy's 2-year well visit was.....well great!!!  It is the first time that I have left a doctor appointment without sonething to "do" or "keep working on" or a referral.  He is on the growth chart for his actual age (well in most areas): 5th percentile for weight and 25th percentile for height!! His head is lagging behind and is not on the growth chart, but is continuing to grow.  I asked his pediatrician if it was a cause for concern.  He said not really, especially if he continues to make progress the way he has been.

Weight: 23lbs 14oz
Length: 32.5 inches
Head circumference: 44.6 cm

He was pleased with his progress in all areas.  Randy talked to him and sang nursery rhymes.  He did not give me a hard time about him eating purees and actually supported my decision to comtinue to do this.  He said that it is keeping him growing and that as he gets older, he may begin to overcome some of these sensory issues.

He was pleased with his therapy schedule and was on board with him doing hippotherapy as soon as he is released from the general surgeon (from his hernia surgery).

Oh, I do have one thing to do... I have to take him to the lab to get his iron and lead levels checked.

I'm throwing in the towel

Well, sort of.  I am pulling back on feeding.  I am going to feed him, but I am not going to push so hard on him trying new food and/or textures.  I am not sure if it is the right thing, but I'm not sure if I can deal with this everyday.

This is how most meals looked when I was actively pushing textures and food.  He would cry; I would get frustrated.  He would be so angry and upset that he would not even eat his favorites after having the other foods pushed on him.  He would be so angry that he spent the rest of the evening crying and angry at me.  He was biting, hitting, and scratching.  He was not happy in the evenings.

Instead, I am going to begin pureeing again.  He will accept most foods if I puree them.  He'll eat chicken, roast, fish, and vegetables if I make them smooth.  I have been adding a little olive oil to make them smooth and to add a little healthy fat.

I'm also keeping him on the bottle.  I am going to encourage the cup use during the day, but I will still be giving him a morning and evening bottle of formula.  I can get him to drink 8-10 ounces this way.

This will not please some of his health care professionals.  His pediatrician and the feeding team are in my corner.  His feeding OT (who is out until June) and the CP clinic want me to push him.

I'm not ready.  And I'm ok with not being ready.  So until then, this is what he'll be doing

Easter/Two Year Pictures

http://myonlineportraits.com/ViewSharedAlbum.aspx?ShareID=6e67ce80-11cd-4801-8a4d-f5bfb5f06f1d

Mama knows!!

Last Monday I posted about Randy having a crying spell that was unusual for him. He was fine after a few hours, but for some reason I was still worried. Well I had good reason to worry; his hernia was incarcerated (no it was not under arrest). He had emergency surgery Saturday morning.

Mama knows!

Let me back up and tell the full story. When I arrived at the daycare Friday afternoon, I went to the toddler room to get Randy. They were not there, but I could hear him in the adjoining infant room. As I grabbed his coat, I heard this burp and someone vomit. I knew that retching voice.

I went to the infant room and they immediately said, "Mom he just threw up". As the teacher was cleaning him up, he threw up again. I gather him and his belongings and we headed home. He was whiny in the car and fell asleep. He did not feel good and I was worried.

Mama knows!

At home he would not eat or drink and whined and cried. He acted as if he was in a lot of pain. He was arching his back and couldn't decide if he wanted to be up or down. Around 7p, I decided he was going to the ER. My fear is that it was his shunt. This was not normal.

Mama knows!

I had to decide between taking him to our local children's hospital (5 miles), the hospital in the next town where his neurosurgeon is (50 miles), or the satellite hospital (of the one in the next city-25 miles). Although my gut told me there was something wrong, I kept thinking "What if I drive this 50 miles and it's a virus". I took the middle road and went to the satellite office.

When we get there I tell them I suspect a shunt malfunction and he is taken back immediately. The nurses and doctors see him quickly and send him for an MRI and a shunt series. While we wait on the results, Randy vomits about three more times. The ER doctor orders blood work and an IV so that she can control the nausea.

After four sticks, the blood has been drawn but there is no IV (horrible veins). The doctor notice there is a lot of air in his abdomen and she examines his belly. She asks about his hernia. When she tries to reduce it, he screams bloody murder and moves her hand. Now his hernia often bulges, but is always easily reduced. Not this time. She has the nurses drop an NG tube to suction some of the air, and insists in an IV (he threw up twice while she was in there). By this time transport is on his way to take him to main campus so that neuro can see him and general surgery can see him too.

Two more sticks and no IV. Transport arrives and takes him to the ambulance. I follow them the 25 miles to the main hospital. I should have driven there in the first place.

Mama knows!

Once we are at the main hospital, I answered the same questions for the 20th time and to the 20th person. Neurosurgery says that he does have a cyst that is enlarged, but that his ventricles look good overall. The ER doc looks at his hernia and has difficulty reducing it as well. A couple hours and an abdominal x-ray later, the general surgeon comes in to examine him. By this time the hernia has reduced, but is still extremely tender. He cries when it is touched. They decide to admit him and operate.

Mama knows!

Now it is 6am and Randy has not eaten or drank since 3:30p. They try again for an IV. Two more sticks. No IV. Finally at 7:30a, Randy was taken to his room. The IV team is paged to his room. Two more sticks. No IV. While they were packing up to leave, one of the surgeons came to talk to me. He let me know what will be done and that he should be going to surgery around 10am. He also let me know that he will not be doing the surgery because he has been at work all night, but that his partner will be in any minute. The IV team explains the issue with finding a line and that he has now been completely fasting for 17 hours. The surgeon says they will get a line in the OR and he will make sure he is not bumped.

My baby was a champ through all this. By this time, he was no longer crying and was just laying there sucking on his paci. He usually does really well when he is NPO. I guess that's because he's not that into food anyway.

He was taken to surgery around 10:30am. It took a little longer than usual because the surgeon said that he had a lot of abdominal fat stuck in the hernia. Fortunately, the blood supply was not cut off yet; so it was not quite the emergency it could have been. He spent Saturday night in the hospital, and was discharged after lunch on Sunday.

He is recovering well. He is sore, but is not crying at all. And although it was not his shunt, he was sick.  I should have listened to my baby last Monday. He tried to tell me. I had a feeling.

Mama knows!

Surgery went well

Randy was pleasant the entire time.  They actually took him back 30 minutes early.  His ear had TONS of thick fluid behind them.  The Dr. drained them and placed the tubes.  He has to have a follow in 4 weeks.  He gets ear drops for the next 3 days.

He ate fries for lunch, took a 3 hour nap, and is back to himself.

I'll post some pics soon.

Why does she keep waking me and putting this bottle in my face?

I woke him for a bottle of apple juice at 7:30a.  He's bleary eyed and tired now, but he'll thank me at 11a because he will not be starving.  Well, ear tubes at 11:50a.  I am confident all will go well.

3:30 am feeding

That is what Randy just had.  Thankfully this is not the norm.  Randy has surgery this morning and he is not allowed any solids or milk after 3:45a.  So mommy set her alarm and we had a snack of milk (in a bottle for him) and animal crackers.

I do not miss niddle of the night feedings.

I guess he can have a bad day too.....

I guess?  After work I picked up Randy from the sitter at the usual time and we headed home.  He played for about 15 minutes and even tried some fun dip from his Easter basket.  Around 4:45, he began crying.  Hard.  He did not want a snack.  He did not want a bottle.  He did not want juice.  He just cried.  He did not want to be held.  He did not want to lie down.  He just cried.

I got him settled around 5:15 and he napped for about 30 minutes.  He woke up crying again.  And he cried. And he cried.  By this time dad was home.  He tried water, bottle, juice, taking him outside, walking around.  He tried everything.  I took him and I tried to calm him.  I even called his sitter and asked her if he had been cranky today.  She assured me that he was fine all day.

I was beginning to worry.  Randy does not cry much; well not cry.  He'll scream or whine if he's not getting this way, but he does not really cry.  And I'm not sure if I can explain this cry.  It was strong and piercing.  It seemed as if he was in some type of horrific pain.  The worst part was that there was nothing we could do to soothe it.  And then somewhere around 7:15, the crying stopped.  He slurped down 4 oz of formula and got down to play.  He played for about an hour, ate one jar of baby food, took his meds, brushed his teeth, and went to bed.  It was weird.

I guess Randy can have a bad day too..... So why am I still worried?

Randy turns 2!!!!

Can you believe it?  I can't.  One of my close friends said, "It seems like yesterday you were in the hospital turned upside down".  You would have to know the story of his birth to understand that statement.  This year has been amazing.  He has gone from a baby that could not roll over a year ago,  to this little toddler who is making HUGE strides.  Since last year he has:

• only had 2 shunt revisions
• sat up without any support
• rolled over both ways
• army crawled
• started daycare
• transitioned in and out of sitting
• spoke a dozen words
• crawled on all fours
• pulled to stand
• walked 30 feet with a walker
• and much more.....

It is so amazing how much he has flourished.  Happy Brithday my baby.

Happy Birthday Randy

As I sit here on the eve of Randy's second birthday I am reflecting on all the progress he has made and how much he has grown. He is so easy to love.
Randy certainly has a fiery personality and a mind of his own. When I think back two years ago at how very small he was and how much he has gone through I just have so much gratitude.
Today he has no idea how many people he has that support him. Family, friends, co-workers, church members, the list goes on.
One of my very dear friends told me that God knew the right mother to give to Randy because she is one in a million. I agree. They are a gift to each other.

Had to leave Randyland

I consider myself a very realistic person, but I must admit that since having Randy I choose to live in an alternate reality.  I see him through these rose colored glasses where today and tomorrow is always bright.  Now I'm not crazy; it's just how I cope and stay positive.

Every once in a while I must venture into the real world and they remind me that all is not perfect in Randyland.  Today I had to buy this:

It was a simple process to get it and the pediatrician actually suggested it in October.  I just kept forgetting to find out if there was a form that he needed to fill out.  I had to print a form off the Internet (or you could pick it up at the BMV).  Then there were a few lines of personal information to fill out and I had to attach a prescription from the doctor.  There were six reasons that qualified a person for a placard and Randy qualified for three of those reasons.  Sigh.

Now I know everyone wants to tell me that this will make things so much easier and that I should see it as a blessing.  Trust me; I know.  I am glad that I have access to it.  But still, it represents imperfection.  And there is no imperfection in Randyland.

Disclaimer:  Please note that the author knows that there is no such place as Randyland and its existence is symbolic.

Ear tubes

Sound familiar?  It should.  Randy had these put in July, 2009, and guess what?  They are not working anymore.  When he received the tubes, the doctor warned that he may have to get a second set.  But he said in 12-18 months, not 8 months later!

I have to be honest, I'm not so sure I want to have then done again.  His ENT is a wonderful man who spends lots of time explaining things and allowing me to vent.  He says that if Randy did not have other health issues, he would suggest that we "wait and see".  But since ear infections take such a huge toll on Randy, he suggests that we do the tubes.  He looked at Randy as a whole when making this reccomendation.  He talked about infection in relationship to his shunt and overall health.  He talked about ear infections and how it sets him back in feeding.  He does not want his ears to delay his speech any more than it already is.  He simply feels the risk of this simple surgery is worth the benefit.  I'm not so sure.

At any rate it is scheduled for April 26, 2010.

False Alarm

Well sort of. I took Randy to the ER Saturday fearing he was having a shunt malfunction. According to the Hydrocephalus Association, the symptoms of a shunt malfunction are:

In infants, signs include a full and tense fontanel (soft spot), bulging of the scalp veins and swelling or redness along the shunt tract. Also watch for symptoms like unusual vomiting, irritability, sleepiness and decreased interest in eating. Children and adults may experience headaches, vomiting, irritability and tiredness. In the event of an abrupt malfunction, a child may develop symptoms very rapidly, in a matter of hours or days. Without treatment, coma, and even death, may result.

Randy had been refusing his bottle, crying at night and eating very little for about 8 days. I kept going back and forth as whether to call the neurosurgeon. Saturday evening he threw up some. I wiped him off and kept playing with him. Then he threw up again; forcefully. That made up my mind.

I took him to one of the satellite ER's of the hospital where he gets his neuro care, not our local children's. He was seen pretty quickly; but we had to wait on them to call in someone to do a CT scan (I guess they are "on call" after hours). They also did an x-ray of his shunt.

The ER doc called the neuro on call at the main hospital, and he looked at the scans. All looked good with his shunt and ventricles, but he had a lot of fluid behind both ears. Also, his tubes look as if they are no longer in the ear canal. The ER doc sent us home with antibiotics and instructions to follow up with ENT.

I love my sister!

That's Love

Valentine's Day has me thinking about love and the people who love my children. Since this is Randy's blog, I thought I would post about a couple who are very important to him; his godparents.
When I had my daughter 16 years ago, I don't think I had a true understanding of the role of godparents. My daughters godparents love her dearly; but when I asked them, I only thought of the fact they would be a "special" auntie. But with Randy, I put a LOT of thought into it. I'm not sure if it was the difference between being a 20 something mom then and a 30 something mom now; or if it was the difference between having a healthy child at birth and a very sick child at birth. I know it was a big decision that I put a lot of thought into.

I considered a few people. I considered my brother and sister in law. They love him very much and I'm sure they would have been honored. I considered my girlfriend who is a single mom of one son. She is smart and takes her job as a parent very seriously. In the end I chose my brother and sister in law. Although the others had good qualities, his godparents have ALL the qualities: they love him, they are smart, they will put work into raising him (if need be), they are young, and they will be starting their own family soon.

Asking them was really emotional; they were newlyweds. And I really needed them to understand what a big commitment this is. I had Randy at 36. He has an "older" mom (and daddy is older than mommy). For most godparents their "commitment" ends at age 18; I'm not sure that this will be the case for Randy. I'm not sure if they will have to be responsible for him the rest of their lives. They understand this and are up for the challenge. Now that's love.

Words, words everywhere

Randy is talking! When he had his speech evaluation in December, I could barely think of 5 words that he used. Now it seems as if he is adding a new word every week. Now he's not holding conversations, but he is definitely using his words. What is even better than the quantity of words he has is that he uses them correctly. He currently says:

mama-me
ma-his sister
dada-dad
mu-babysitter
up
down
hi
here
tan u-thank you
uh oh
shoofy-shoo fly
nigh nigh-night night
pee a boo-peek a boo
stop
no
bye bye-good bye
buuuuy by-good bye and get out of my face
all done
paa cake-patty cake
yay

So proud of my little boy!

"Night Night"

That is what Randy said after I put on his pajamas tonight. I kept trying to play with him and he continued to say "night night" until I put him in the bed.

How cute is that?

CP Clinic

They had cool mats so he could get on the floor

By this time he was past ready to go!

Randy finally had his first visit at the CP clinic. I must admit it went surprisingly well. I was nervous and just wasn't sure what to expect. He saw several people; some were doctors, some were not.

We arrived at 7:44a for his 8:00a appointment. We were signed in and in a room by 8:05a. The nurse took his vitals and stats, and explained that we would see many people and they would come in whatever order they were available and the we were free. BTW, my little man weighed 23 lbs exactly and was 33 inches long and his head circumference was 45 cm.

Orthopedist:
He was first to see Randy. He asked some questions about Randy's health history and examined him. He said that he has tightness in his hip and heel. His feet turn in some, and that he may need surgery in the future for this problem. This surgery would help his gait and make him more stable once he begins walking. He also suggested AFO's (ankle foot orthotics) once he is doing a lot of standing and cruising. This will provide him support needed to learn to walk. He did not want to put him in them now since they will restrict his ability to crawl and transition in and out of sitting. He says that being in a stander is OK, but not absolutely necessary since he crawls well and can bear some weight. He said that if he has access to one, then he can use it; but by no means should one be purchased for him.



Nutritionist:
She reviewed Randy's chart and made note that he is followed by the feeding team at the children's hospital in the next city (same hospital as his neurosurgeon). She said that his growth looked good. She had weights from other times he'd been at the hospital, and she plotted those stats on a growth chart. His height is really taking off and he is in the 25th percentile for height. His weight is following a great curve also and he is in the 5th percentile. All of these are for actual age. His height to weight ratio is a little low, but nothing to be concerned about. Height to weight ratio should be somewhere between 90 and 110; his is 87. She said to continue to follow the recommendations of the feeding team.



Social worker/car seat specialist:
Her visit was a waste. She came in, looked at him and said "Oh I'm sure he's fine in the seat he's in." She says this based on the fact that he is sitting and crawling and is not severely involved. Who made her a doctor? This is the second time I've seen her. The last time was at her office when she was supposed to give Randy a special needs car seat. She gave him a car seat that was not very functional for him and certainly not a special needs car seat based on her assessment of him, not based on his medical needs. I'm not angry about the seat (I bought him another one) because no one owes him anything, but I don't like the fact that she is making these judgements and she is not a medical professional. I don't want anyone making assumptions about Randy; whether they are overestimating him or underestimating him. But that is a topic for another day.



Physical therapist:
She was wonderful. We talked about his current therapies and his skill level. She felt his current therapies were appropriate. We talked about his feeding issues; she gave me a lot of encouragement. She shared some personal stories about her son (although his feeding issues were milder than Randy's) and his struggle to eat an age appropriate diet. She said that is is a process and that it will not happen overnight. She made me feel very hopeful that he will eat normally in the future.



Speech therapist:
She was also very pleasant. We talked about the words that Randy had and what he seems to understand. I told her he was starting speech therapy that same afternoon. She said that he was doing a good job and that his speech was not too severely delayed. Then she hit me with a whammy! She said it's time to get rid of the pacifier and the bottle. She said to start with the paci since it has no nutritional value. I had already banned the pacifier from daytime use and only make it available at night and for naps. I'm dreading taking it away. She then told me to have his feeding therapist and his speech therapist help me get him to drinking from a straw. Not only will this be easier for him to hold (he can't hold his cup and tilt his head back to drink), but it will strengthen his cheek muscles which will help with speech and overall feeding. Once he is able to take a few ounces by cup at one sitting, then I need to start pulling back bottles and/or replacing the milk in the bottle with water. Wish me luck.



Developmental pediatrician:
This lady is fabulous!!!!! She spent so much time talking to me and looking at Randy's scans. She reviewed his medical history. She repeated some of the things that the others told me and tied them together. She was AMAZED that the boy she read about was the same one in the office. She said that he not behaving the way he looks on paper or in his scans. She said that cognitively he seems to be at about 15 months (from her observation); she did not do a formal assessment. She wants me to step up some cognitive activities with him. She, the orthopedist, and the physical therapist all feel he will walk (of course I can't hold them to that). She honestly feels the biggest hurdle to his development will be his vision. She gave him the official diagnosis of: spastic diplegic cerebral palsy.



I left this appointment feeling very encouraged. I was wondering if his therapy needs were being met or if there was more I should be doing. It looks like we are doing all the right things for Randy. We left at 11:28a on our way to radiology for hip x-rays. He returns in six months.

Mall Play Area

Friday evening we went to the mall to pick up a few things (actually my teen wanted to pick up a few things). While she went into one of those teen stores with the loud music, I took Randy to the play area. This is the second time I've taken him. The first time was about six months ago and it was early in the morning. At the time he had just began to army crawl. He did not care for the play area and basically sat on my lap and watched the other kids play.



But now, he seemed to really enjoy it! He sat next to me hesitatingly at first. He began to crawl towards the play structures, but quickly came back to sit next to me. He was afraid. The carpet was multi-colored; some dark areas and some light areas. He could not tell if the ground was changing.... does that make sense? Randy has some depth perception issues. When he is on a multi-colored surface, the light areas look as if they are holes in the surface. But he is a smart boy and noticed that the other kids were able to walk on it, and went on his way.



He banged on the slide and a giant phone pad. He played with these rotating blocks and watched other kids. He then did such a big boy thing, he crawled to a little girl and said "Hi!". She was about 2.5 or 3. She smiled at him and moved on. Then another little girl who was barely a year old came over and he said hi to her also. They did the whole touch your face thing and interacted a little.



I was so proud of my baby with the way he played. I know this is a direct result of daycare. I have a picture, but can't seem to download it. Maybe later.